Samuel S.

Condition: CPT 1 and Juveline Idiopathic Arthritis
City, State: Bend, OR
Club: Westside Village Magnet School Sparrow Club Service Hours:
Date Adopted: 11/20/2015

Samuel's Story:

Sam is an adventurous and fun 5 years old. When he came to his family he was well below his birth weight. He then proceeded to gain 1-2 lbs. for the next 20 weeks! At 4 months old, after some initial tests and some blood work that was referred to Dornbecher’s in Portland, doctors diagnosed Sam with a metabolic syndrome called Carnitine palmitoyltransferase I deficiency, which is often referred to as CPT I. CPT I is a condition that creates complications when the body uses more calories than it should especially when he is sick. When he gets sick he can have a build up of deadly toxins, so he has to have an IV Glucose to give his body additional fuel when he is sick. This deficiency is rare in the continental United States. Complications of CPT I Deficiency has hospitalized Sam 6 times before the age of 5.

Juvenile idiopathic arthritis (JIA) has put Sam in the hospital at least 6 times just this year. Now, this rare auto-immune disease is attacking Sam’s joints. He has been diagnosed with Polyarticular Arthritis, which is a form of arthritis that affects five or more joints. He will soon start a low dose chemotherapy that will help with joint pain and disease progression. Sam currently takes certain steroids to help with the joint pain. The type of Arthritis Sam has is the most progressive and debilitating type of Juvenile idiopathic arthritis.

Sam has a busy schedule and long road ahead of him. ​He, and his mom, Vicki, travel to Portland at least once a month. In December he will have another medication evaluation. He is continually being evaluated because he has a case history that has never been seen before.
Sam will be starting physical therapy soon to be coupled with medication improve his range of motion in the affected joints.

Although Sam has had a tough journey so far, he has never stopped exploring and loving others. He continues to be optimistic in his battles and love dinosaurs, as well as his mom!

Sam will be adopted as a Sparrow to Westside Village Magnet School in Bend. There, students will work hard to raise money for Sam through sponsored community service and fundraising projects.


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